When People Don't Read What You Wrote and Then Accuse You of Saying Things You Didn't Say
Last week I was quite excited about my newest piece for The Conversation, "Why the Case of Jahi McMath is Important for Understanding the Role of Race for Black Patients." My argument was a simple one, or so I thought. It's a similar argument that I made a few months ago on this blog. The argument was race may have shaped the interactions between the hospital personnel and McMath's family. I then showed how the well-documented history of racism within the healthcare system has contributed to mistrust that some African Americans experience. One thing that I've addressed elsewhere but that didn't make it into the article for The Conversation, is that even in present-day, there's compelling evidence that pain complaints from black patients, for example, are not taken as seriously as they are from white patients. This matters because understanding this troubled history (and this troubled present) and its consequences can provide a way to overcome mistrust, rather than dismissing families outright as "irrational" or "ridiculous" when they ask express certain kinds of worries about treatment and diagnosis.
The only things I said about brain death per se, were that: (1) the general public is sometimes confused about what a diagnosis of brain death actually entails, (2) that in California, where McMath's surgery occurred, a diagnosis of brain death is a determination of death, (3) that the family ultimately rejected the hospital's diagnosis on religious grounds, and (4) that the family moved McMath to New Jersey because New Jersey allows religious exemption for brain death diagnoses. I offered this background in order to explain to readers how/why a child with a confirmed diagnosis of brain death in California wound up in New Jersey receiving treatment for four and a half additional years.
In reporting that McMath "died" on June 22, I followed the convention of national media that is widely regarded as credible, including the Washington Post and CNN, given that The Conversation is an outlet that follows many of the conventions of the press. In fact, though its writers are academics, its editors are journalists.
My article was not about the nature of brain death. Yet, I was accused of not "understanding" brain death (which I understand quite well), of "shilling" for the family (who I've never met and, therefore, am not in a position to shill for), and of accusing the hospital personnel of being racist (which I did not).
My article simply focused on how and why sometimes race shapes interactions between patients/families and hospital personnel. I never suggested that brain death was "curable," and I was silent on the whether I thought McMath should have been treated in New Jersey. I will say this now about the family's decision to take McMath to New Jersey: aside from whatever skepticism the family had about McMath's treatment at Children's Hospital and however disrespected they felt from the staff, the final justification of which they availed themselves for rejecting McMath's diagnosis of brain death was on religious grounds. And although in the state of California, a confirmed diagnosis of brain death is the end of the matter, the state of New Jersey (1) allows for religious exemption, and (2) allowed Jahi McMath to receive treatment in New Jersey. To that end, the family were within their rights to pursue this course of action. Whether I, personally, think that was a reasonable course of action is irrelevant. But I do know that, regardless of my own views, I have zero interest in bashing the family for making this particular decision in this instance.
However, as a bioethicist, I think that this aspect of the case raises some very interesting questions that were beyond the scope of the article that I wrote for The Conversation. There are long-standing conversations among bioethicists, religious scholars, healthcare personnel, legislators and the general public about the tension between religious conviction and medicine. Every few years the media picks up a story about a patient/family who has either refused treatment or pushed for additional treatment on religious grounds. Some refuse blood transfusions for religious reasons; others may reject certain kinds of medical implants if made from certain animal products. Regardless of nature of the specific instance of tension between medicine and religion, even the most sensitive hospital in the world cannot accommodate every request. (Nor do hospitals have the resources to indefinitely treat patients who have no hope of recovery--no matter how respectful they want to be of the deeply-held the religious convictions of a patient's loved ones.)
Another aspect of this case that I find interesting relates to the use of language. As I previously stated, the national press reported (and I followed their convention of reporting) McMath's death as June 22, 2018. But it is also the case that a determination of brain death is a determination of death in most states and throughout the medical and bioethics community. It is also true that cases like McMath's happen (where a family rejects a diagnosis of brain death and continues to pursue treatment), albeit rarely. Maybe it would be to useful have language to describe this "state" between brain death and cardiopulmonary (heart and lung) death. There may be good arguments to reject such language, namely, that the question is already settled (the word is "death") and so to develop any additional language legitimizes religious views that are contrary to medical fact. My only response would be that this religious view has already been legitimated. The fact that New Jersey allows a religious exemption is evidence of this. Any of these issues, and dozens more, could have been interesting discussion points from my commenters. Although, as I stated previously, these issues were beyond the scope of that particular article, these issues are certainly relevant in a broader sense and might have made for interesting discussion in the comments section.
However, some of my commenters chose to launch personal accusations and attacks against me. Many of the more hostile, inflammatory comments have been removed by the moderator. But the comments I found most distressing were the attacks on McMath's family. The amount of vitriol unleashed toward the family went far beyond commenters' disagreement with the family's choices. There were repeated references to gaming the system and welfare that I won't repeat. Reading these comments reminded me of how black people in general and black mothers/black motherhood specifically are treated with suspicion. Dorothy Roberts has written extensively on this in her classic, Killing the Black Body, and there have been other important volumes on black motherhood.
While a specific post on black motherhood is a task for another day, what strikes me about the comments is the fact that those who posted them (a) clearly didn't read (or comprehend) my article, and (b) are so blinded by their hostility to black folks that the mere suggestion that race might impact some interactions had them foaming at the mouth. It's telling that in their attacks on me and the family, the commenters immediately appealed to racist stereotypes and insults: I'm a lazy writer, the family are getting over on the New Jersey welfare system. Clearly none of these people know anything about my work ethic, but they know the stereotype of black laziness. Likewise, they don't know anything about the family's financial circumstances, but they immediately accused the family of being on welfare, and even worse, undeserving of the welfare benefits the commenters imagined the family to have received. Most tellingly, these are the things that commenters wrote while insisting that race doesn't operate in our daily lives and could not have been operating in the background of the family's interactions with the hospital. As annoyed as I've been to read attack after attack, it's strangely validating to watch people make my case for me.